My mother was diagnosed with IIH in 2006, originally they believed it to be pseudo tumor cerebri. She underwent approx 30 lumbar punctures to manage her ICP, had stents put in her brain to try to relieve her ICP, and eventually had to go onto blood thinners because her brain rejected the stents along with multiple shunts to where her body was also rejecting the tubing. Corticosteroids for 10 years from 2010-2020 as well as morphine daily orally (Oramorph) As well as intravenously if the oral solution didn't work. She passed in early 2020 at the age of 47 from covid. I hope one day there will be a known cause for IIH, it's a debilitating unknown illness and I watched her suffer through many invasive surgeries and lose her mind to the pain medications. Thank you for you insight Dr Andrew, it's given me a lot of understanding.
Hi , I feel your pain.. And your mum's too .I have this condition. Have now for 13 years.. I'm 53 now , and I will keep fighting 💪..... Your mum is with you always. May she rest in internal peace 🙏
I have had this disease for 10 years was diagnosed after a brain aneurysm and I suffer with it so much. I take AcetaZoloamide 500 MG 3 times a day and I still have no relief. I can't find a Dr who is willing to help me so I don't suffer in pain almost every day of my life. I really don't think there's any Drs out there that care . They really don't know anything about this disease they right down whatever they want to instead of acutely listening to real people who actually suffer with it . They could. Make a difference in our lives if they wanted to.
I am 18 years old. I was diagnosed with a disease 9 months ago. I had a lumbar proton shunt implanted twice in a row because the first one broke and the second time the surgeon did not install it correctly. It also failed now. I am on treatment with diuretics and some stomach and glaucoma medications and headache medications such as Advil. I was infected with viral spinal fever twice because of the shunts. Now the surgeon. He is putting pressure on me to implant a third shunt because I started to lose my vision due to pressure on the optic nerve. I am a man and I am not obese. My weight is 65 and I do not have any other disease.
I'm dealing with this myself. For like as long as I can remember. I feel like my life has suffered greatly. My doctor wouldn't help me or refer me or entertain the idea I even had it. I really need help.
Is there any link between acne and iih whenever my pressure raises I find that I get significantly worse acne all over my body and haven’t found any way to combat this
It's a frustrating condition, right from the diagnosis stage. Neurologists don't detect anything abnormal and refer you to an eye specialist. The eye specialist sends you back to a neuropathologist. Meanwhile, the brain fog and the constant drowsiness are debilitating. I was lucky to find a specialist who would administer injections straight into the spine and perform Chinese acupuncture. Other than black floaters in one eye, I have recovered almost 100%.
This disease is literally SO MISUNDERSTOOD. Doctors really don’t know crap about it. They only know certain things like: it can cause blindness, some people that get it are overweight, optic nerve swelling, tinnitus, vertigo, and headaches. But THERE ARE SO MANY OTHER THINGS THAT OCCUR WITH THIS DISEASE. First, the brain fog is something serious. It’s almost like having a version of short term dementia. The fatigue is another extremity! I need a lot of sleep! But then in the same breathe, I have a difficult time falling asleep! It’s so weird! Right around the time that my symptoms started, all of a sudden I started suffering from constipation OR diarrhea. There is no in between- either I have one or the other and I have a great diet so it doesn’t make sense. My moods have changed DRASTICALLY! I am no longer the person I use to be. I am irritable, anxious, and often feel upset for no reason. I’m sure I’m forgetting a symptom… but this disorder comes with so much than doctors actually are willing to understand. Every single doctor that I have seen doesn’t even take the time to review my file before seeing me. They literally review my file right there in the office. So they don’t take the time to research IIH before I come in- especially because it’s such a rare disorder. I have had to see 6 doctors and 3 MRIs total now, plus one misdiagnosis. I have grown to absolutely hate healthcare in America because most of these doctors truly see you as a $$$ and I believe that most of them hate what they do.
@@Angelina-kq4oq I forgot to mention acne. I never had acne my entire life and soon as this started- seems like everytime I have high pressure I break out. My face and body also swell up! Then, exercise… physical activity really tires me out… it DRAINS me to the core. Even walking for 30 to 1 hour takes so much energy from me. The list goes on and on…. But they make this disorder seem so simple when it’s literally ruining my life.
I agree I was recently diagnosed with IIH but the doctors don't know anything about it I had a CT scan and an MRI done it wasn't because of a tumor or because I was bleeding in my head so they called it idiopathic cuz they don't know why i have it I had an appointment yesterday with the eye doctor and he said everything looked normal with my eyes so he said I might have it because I'm 25 and I'm overweight so he encouraged me to lose at least 20 lbs to see if it would go away on its own he also referred me to a neurologist so he can do more studies and do a spinal puncture to relieve the pressure in my head but I'm scared I have 4 kids that need me and I dont want anything to happen to me 😢 so I'm eating healthier now and trying my best to lose the extra weight and hopefully it goes away cuz doctors really don't know anything about this Condition
can you do a video explaining how obesity causes the increased ICP and why it appears more often in obese females than obese males? I'm just curious what is different between the sexes. I thought birth control was the difference but in your secondary IIH video you said the birth control itself isn't really the issue it's the thrombosis.
"The mechanisms underlying the elevated intracranial pressure are not fully understood. As typical patients are obese and female, a pathogenic role for sex hormones and adipokines has been speculated." [Oxford Textbook of Medicine (6th Ed. 2020)] "In most instances [...] no specific cause can be found, and the disorder remits spontaneously after several months. This idiopathic variety occurs most commonly among overweight women aged 20-44." [CURRENT Medical Diagnosis and Treatment (61st Ed. 2022)]
As a nurse, and someone who also suffers from IIH my view on this is that increased body weight likely puts extra pressure on important veins in the upper body. That sort of creates a situation where the blood that travels down from your head and neck towards your heart gets backed up and that causes increased ICP. That is at least what my neurologist told me, and as a theatre care nurse that sounds plausible to me. However, I am not completely sure why it is more common in women. This is not a fun disease to have and I think more research have to be done.
@@Life_with_iih Thank you for your contribution. I am trying to think if it is too rough for you to go through a heavy shift with the terrible headaches.
It’s more like if you don’t have paps so you are shit out of luck so we will dump you into the remission mission box even though your opening pressure is 36 but we will not place a shunt even though it helped the headaches and your ability to function.I used to have papillodema but now I’m in the limbo zone.
I got diagnosed with IIH and 9 months later told I don't have it. Because the fluid on the brain are not that much. I suffer from severe migraines. And so I'm back to square 1. Did mri and it did show the empty selar.
I am 18 years old. I was diagnosed with a disease 9 months ago. I had a lumbar proton shunt implanted twice in a row because the first one broke and the second time the surgeon did not install it correctly. It also failed now. I am on treatment with diuretics and some stomach and glaucoma medications and headache medications such as Advil. I was infected with viral spinal fever twice because of the shunts. Now the surgeon. He is putting pressure on me to implant a third shunt because I started to lose my vision due to pressure on the optic nerve. I am a man and I am not obese. My weight is 65 and I do not have any other disease.
I have IIH with all the symptoms and visual changes , I take diomox 2 500mg capsules BID and zonisamide 25mg capsules BID , the doctors said I am too young to get the shut and I am sick of the medication it makes me so tired… do you have any other advice other than increasing my dosage?
I am 18 years old. I was diagnosed with a disease 9 months ago. I had a lumbar proton shunt implanted twice in a row because the first one broke and the second time the surgeon did not install it correctly. It also failed now. I am on treatment with diuretics and some stomach and glaucoma medications and headache medications such as Advil. I was infected with viral spinal fever twice because of the shunts. Now the surgeon. He is putting pressure on me to implant a third shunt because I started to lose my vision due to pressure on the optic nerve. I am a man and I am not obese. My weight is 65 and I do not have any other disease.
Do you do international consults? I am in New Zealand and highly suspect I have IIH. It seemed to happen out of nowhere 7 years ago. I was having alot of vitamin A at the time & I have since been on steroids for ulcerative colitis which has caused the pain to become crohnic and debilitating. I had a head injury & meningitis as a baby. I've spent thousands in the past 3 years on seeing private nurologists who are just calling it a headache. I've had a scan which showed 'injury all over the brain due to pressure or fluid and fluid filled gaps & fluid around the optic nerves' I don't know what this means and this was never put into my notes. I've been treated by an osteo, chiropractor, I've had massage & used a tens machine, these make it so much worse. I've had nerve block, steriod and botox injections with no change. I feel like my symptoms match IIH but Dr's here don't know anything about it. I am happy to pay to talk to a Dr who does. Thank you 🙏
Hi I’m so sorry to hear you have gone through so much with this! I am also from NZ and I actually eventually got my diagnosis from a regular eye test where they noticed the swelling around my optic nerves and referred me to ophthalmology at the hospital who then referred me to neurology. I got a diagnosis after an mri and a lumbar puncture. I hope you have found help by now but if not maybe a path via good old spec savers might just be worth a try!
I am 18 years old. I was diagnosed with a disease 9 months ago. I had a lumbar proton shunt implanted twice in a row because the first one broke and the second time the surgeon did not install it correctly. It also failed now. I am on treatment with diuretics and some stomach and glaucoma medications and headache medications such as Advil. I was infected with viral spinal fever twice because of the shunts. Now the surgeon. He is putting pressure on me to implant a third shunt because I started to lose my vision due to pressure on the optic nerve. I am a man and I am not obese. My weight is 65 and I do not have any other disease.
